What Happens When Children with Autism Age Out?

My friends and colleagues are all attending high school graduations, going to graduation parties, and talking about what colleges their kids got accepted to.

My son Andrew is not going to college.

Andrew is 19 years old but he does not have a driver’s license, he has never had a girlfriend, he has not learned to shave himself. I have to help him wash his hair when he takes a shower.

Your friends talk about the milestones, rites of passage, and new opportunities for their kids. You nod and smile even though your stomach gets a knot in it, not because you aren’t happy for your friends—you are—just because you had so many hopes and dreams for your own child too.

Jennifer and I talked on the phone every day. Her husband barbequed the best ribs in the state of New Jersey. Their daughter was born four months before Andrew and we were deliriously hopeful together. Jennifer had another child, Avery, a year after Andrew was born. Andrew was 27 months old when he was diagnosed with autism. I hit the ground running trying to help him, researching treatments, finding other parents to talk to , fighting—I mean advocating—for his education with our ill-informed school district.

When Andrew was five, we went to Jennifer’s house for a visit. Andrew walked around the room looking at colorful things that caught his eye. Avery was only four years old, he grabbed Andrew’s Magna Doodle and made a beautiful drawing of a flower : “Look, Mommy, look what I drew!” Avery was being four —a typical four —that’s all, but I couldn’t breathe. My heart was broken in a thousand pieces.

I don’t wish anything bad against people with typical kids. They just have no idea. They don’t understand what parents with children with autism go though. Of course we love our kids as much as they love theirs. But we hoped for something better for them.

In some ways I’m lucky. My son is not violent. While some people affected by autism are non-verbal, Andrew can communicate, as you’ll see in the video. If he points to a place on his body and says “red,” that means it is hurting him. Although he is adult age he still has a childlike love for his mother. He trusts me completely. He and I are very close and I’m grateful for that. It’s a blessing.

But I’m also worried. What does Andrew’s future hold?

Andrew has two more years of high school left. As part of a work program through his school, he helps with filing, shredding, and data entry at the principal’s office. He puts silverware in the containers at the cafeteria and condiments on the table. Andrew can also use a computer. He loves Sesame Street, Winnie the Pooh, and Nickelodeon cartoons. He collects VHS tapes.

Andrew at his high school swimming program at Montclair State University

How will we teach him enough skills to get a job?

I’m not thinking about finding him a place to live apart from me. But I’m a single mom with a full-time job that supports us. When you work full-time it’s hard to get the dominoes lined up. Every parent with a severely autistic child like mine who is aging out of public education has a similar concern: these kids need to have a place to go after they turn 21.

If something happens to me, or when I get too old to take care of him, what will happen to Andrew? It’s overwhelming to try to plan for his future, to worry that eventually there will be no one to watch him, to wonder what will happen to my sweet boy when I’m no longer here…

Do you have a child with autism? Are you wondering what will happen to him or her? We love reading your comments and we appreciate your thoughts and advice.

Heidi Roger is the Vice President of Financial Operations at Barney’s New York and a founding member and treasurer of SafeMinds. She sometimes wishes she had chosen to be a stand up comedian instead of a financial professional.

Does any one know of programs in South Dakota, Minnesota or Iowa that work for adults with autism who have ages out? I am on the border of these three states and can't find anything for my son that works.

Most children with autism are eligible to receive special education services through the school system until age 21. As the nation’s largest provider of services and support for children and adults living with autism and their families, Autism is part of who we are as a society,young adults who turn 21 are pushed out of the school system. They often end up with nowhere to go; they simply disappear from productive society. This is what educators call 'falling off the cliff.

Please take a look at an organization in our area :
Hope Autism Foundation which is flourishing
And the other that us is in the beginning stages of fundraising is Fill A Need Foundation. I am involved personally in this one and we are in need of support!
Well written and expressed Heidi!

My son Nick has high functioning autism and will turn 18 this August. I have chosen to home school him after trying several private schools with the help of a scholarship program. Attending school with other teens would no longer benefit my son because, as an adult Nick's academic level to date is that of a fifth-grader. He seems to be making much more progress with his home schooling arrangement than he was in a school setting because, even though he had his own individualized curriculum, there were too many distractions for him, never mind the social and emotional confusion that goes along with Nick's situation. My goal at this point is to get Nick academically up to speed so that he can test well enough to someday get his high school diploma or equivalent certificate, whatever is available to him. That is my question really...once Nick is actually prepared to test for any type of high school completion, how do I go about finding out what arrangements to make for him? I moved to Georgia not too long ago, and I am not fully aware of anything of this nature that is offered here. If anyone can help with this, it would be appreciated. I too have great concerns about Nick's future, but I have no other choice but to take this one step at a time. Thanks for any feedback.

I am a board member of Breakthrough in Knoxville TN
Founded by parents 10 years ago, we serve adults with
Autism. We have a Saturday recreation program, a day program
Job coaching.
From 9-3, and a village of 7 homes.
Breakthrough began when a group of parents
Whose children were aging out of school
Got together and talked about the future
What would their utopia look like. They wanted a place
Where their children were part of a community
Where they could have a BBQ
Please come for a visit, or send me an email
I can forward to our executive director.
Thank you
Kathie

Such a well written and thought provoking article. I have often wondered about this myself. As parents of pass on, who will take care of these autistic children who can not take care of themselves? It is an issue that our country will have to face eventually.

Dear Heidi,
As a mom of an autistic son, I shared all of your concerns as he was growing up, particularly in his teen years. He could barely function back then, and the future was grim.
When I had no more tears left, I accidentally found Andrew Cutler's oral chelation protocol, with Alpha Lipoic Acid. That is when things started to change for us. My son, now 20 years old, is now very high functioning and is in his junior year at the University of Illinois online program, Computer Science major. His GPA is 4.0. He has had girlfriends. Life still throws challenges his way everyday, but I no longer worry sick what the future will bring.
Don't give up, mercury poisoning is treatable, in most cases!
Wishing you and Andrew all the best,
Fani in Houston, TX

Me too, Fani! We started my son on Cutler's program at 4, but he's completely recovered now in elementary school. So thrilled that your teen boy is doing so well!!
I met Dr Cutler recently (he's pretty easy to get hold of) and he's writing a book and needs real-life stories. You should let him know about your son, he's be happy to know.

Fani and Michele B can you please give more info about Andrew culter's oral chelation. I have a six year old non verbal, she doesn't have much of behavior issues but she cant communicate , just thought this might help , we have tried so many other treatments but haven't 'seen any result , and she is high on mercury. thanks

This is a never ending problem. I have a daughter with special needs, not Autism, but a syndrome called HPX, she does have autistic tendencies but she graduated with a regular diploma, one year later then she was expected too.
What do I do with her now? I'm trying to find a program that will teach her life skills, she is so lacking in them. She is a fantastic child, always happy, always trying to help but she is very naive, trusts everyone and can be influenced by anyone which may not be the greatest thing. I have taught her right from wrong but I so worry about her.
This past year she volunteered at a special needs school, they were great with her, they tried to help me and her by making her independent. They do understand what I am going through but don't know how else they can help.
I need a program that will help her to become independent, I know she can do this but it will take a lot of work. HELP!!!
Thank you for your story, it seems there are a lot of us out there and no one to help.
Stacy L. Gutner